Archive

Archive for October, 2016

A gritty new book on a survivor of Belchertown State School

October 27, 2016 3 comments

Donald Vitkus spent his childhood years in the 1950’s at the Belchertown State School, one of the large institutions for people with developmental disabilities that used to be common in Massachusetts, but have now largely been shut down.

“You’ll Like it Here,” which is scheduled for publication on November 1 by Leveller’s Press of Amherst, MA, is the ironically titled story of Vitkus’s life, as told to Ed Orzechowski, a COFAR Board member and president of the Advocacy Network, an affiliated organization. A book signing is scheduled for Sunday, November 13, at 4 p.m. at the Florence Civic Center, 90 Park Street, in Florence, MA.

I had a chance to read an advance copy of the book.  It is an emotionally gripping account of the resiliency of the human spirit. The result of more than 40 hours of interviews, it is Vitkus’s recollection of growing up at Belchertown, how that experience shaped the rest of his life, and his “passionate desire that we never return to those days.”

eds-belchertown-book-cover-image2

In 2005, Orzechowski was assisting at a book signing at Holyoke Community College for “Crimes Against Humanity,” a detailed account by Benjamin Ricci of conditions at Belchertown and the other institutions prior to the 1970’s. Ricci had been instrumental in bringing about a class action lawsuit in that decade that resulted in major improvements  in the care and conditions in the facilities.

Following that 2005 book signing, Orzechowski says, a member of the audience approached him.  It was Vitkus, then a 62-year-old student at HCC. Vitkus had actually been responsible for arranging Ricci’s talk.

Vitkus told Orzechowski he had grown up at Belchertown, and was looking for someone to help him write his life story. That conversation evolved into Orzechowski’s book.  Vitkus is now an advocate for people with developmental disabilities and is vice president of the Advocacy Network.

Vitkus was sent by a foster family to Belchertown in 1943, when he was six years old.  He had a tested IQ of 41 and was labled “a moron” in the state school records. But as you read this account, you realize just how faulty IQ tests can be.  In fact, Vitkus and many of his fellow “inmates” at Belchertown had to use their wits to survive there.

You may marvel, for instance, at the ingenuity Vitkus and a handful of other boys used in a number of instances to light cigarette butts they had found, using only an empty overhead light socket in a boys bathroom and a strand of steel wool.  Matches were forbidden.

As I read this story, I got the impression that there are actually two main characters in it. The primary character, of course, is Vitkus.  But I found myself viewing Belchertown as a character as well — it’s a brooding presence throughout the book.  Belchertown is the evil institution incarnate.  It is Vitkus’s triumph that he was able to survive Belchertown and get on with his life, and ultimately to help others in the largely privatized group-home system that has replaced the large institutions.

This is a gritty book, and a disturbing one. It is not for the faint of heart. Some of the incidents are mind-numbingly horrifying.

What Vitkus and so many others went through at Belchertown in the 1950’s was the result of an attitude at that time that people with intellectual disabilities were not only sub-human, but that horrendous things could be done to them without fear of retribution.  The residents were abused and treated as prison inmates by many of the staff. The place was overcrowded and unsanitary.

Beyond the abuse, there was an attitude at Belchertown at the time that few of the people living there had any potential to live outside of the institution, or any need to be treated with basic human dignity. For instance, the residents were not even allowed to receive Communion in Catholic services that they attended at Belchertown.

The only person who would receive Communion was the residing priest, Vitkus told Orzechowski, “who would give it to himself while we all watched. We were never allowed to receive, I guess because we never had confession. I think they figured us morons wouldn’t know when we were sinning, anyway.”

And yet, there were exceptions to the prevailing conditions and attitudes at Belchertown:  The actual school on the grounds was a haven for Vitkus.  Unlike most ward attendants, the teachers in the school were encouraging, he notes.

There were little satisfactions, such as the sudden appearance in Vitkus’s ward of a television set, which had been bought by members of the Belchertown Friends Association, a group formed by parents of patients. “Without them, we wouldn’t have known what television was. I wouldn’t have gotten to see the only World Series the Dodgers ever won in Brooklyn.”

TV also showed Vitkus news coverage about the civil rights struggles of the late 1950’s.  These images raised troubling questions for him. “Why were colored people treated like that?” he wondered.  “Why was anyone treated like that? Why did places like Little Rock, Montgomery, and Belchertown exist? Where was justice?”

There were occasional outings from Belchertown as well — to the Belchertown Fair and to Camp Chesterfield, a boy scout camp.

But Vitkus’s experiences at Belchertown were mostly hellish.  At one point, he began refusing to take mind-numbing Thorazine and bit off the finger of an attendant who was trying to jam the pills down his throat.  He spent 34 days in solitary confinement as a result.  “Lithium and Thorazine were chemical restraints used to supplement leather straps,” he states.

In 1960, Vitkus was “paroled” from Belchertown at the age of 17, after graduating from the sixth grade at the school. His IQ now tested at 80, and he was sent to a program run by the Catholic Church called Brightside. Conditions there were remarkably better than Belchertown had been. There was no one there to force meds down his throat, Vitkus notes.

But Vitkus was clearly smarter than his stated IQ. After he did leave Belchertown and was living on his own, he bought a set of the Encyclopedia Britannica from a salesman and proceeded to read it. But he was dogged by the state having classified him “as a moron.” His draft card read 4-F, which meant he was unsuitable for the military.

That 4-F classification was so offensive to him that he resolved to change it; so he went to the local draft board office and got it changed to 1-A.  He was eventually shipped off to Vietnam where he first served as a cook for the Army, then engaged in combat and lost his buddy who was killed in a firefight.  Combined with the experience of Belchertown, Vietnam resulted in continuing guilt feelings and posttraumatic stress disorder for him.

After his return from Vietnam, Vitkus got married to a young woman whom he’d met while he was a resident at Brightside.  They had two children, a boy and a girl.  He also took night classes at a local high school and received a high school diploma.

Yet the wounds inflicted by Belchertown were always still there, even in his marriage. He was incapable of affection with his wife and could not relate in basic ways to his kids, and they all resented it.  Eventually, his wife filed for divorce.

Vitkus  later reconnected with his son, Dave, who became a police officer in Northampton, and the two of them went on an exhaustive hunt together for information about Vitkus’s past.  They first went back to Belchertown, which was then in the final process in the early 1990’s of closing, and later to court houses across the state for information about Vitkus’s mother and family.  With the help of a probate court investigator, they eventually found two of Vitkus’s sisters and a brother, with whom he reunited.

At the age of 52, Vitkus remarried.  But his past still wouldn’t let him be.  When his son Dave applied for a sensitive federal job, Vitkus was questioned during the background check by FBI agents. The agents, who knew about Vitkus’s background, interrogated him regarding some unsolved crimes. It was another reminder that his past was still a part of who he was and who people perceived him to be.

Vitkus eventually lost his job due to the continuing decline of the manufacturing industry in western Massachusetts. But it was the beginning of a new career in caregiving to people with developmental disabilities. He earned an associates degree in human services at Holyoke Community College — his college education was funded by the company that had laid him off.  He began working in a group home and took on a difficult resident there in whom he recognized potential as well as some of his own character traits.

A lingering irony

For me, this book highlights a key irony in the history of Belchertown and the other facilities like it in Massachusetts. The irony lies in the aftermath of the class action lawsuit that Ben Ricci filed in the 1970’s with the help of Beryl Cohen, a Boston attorney, who was the 16th attorney Ricci had approached. The federal court case was overseen by U.S. District Court Judge Joseph Tauro, who required major improvements in care and conditions in the facilities.

While the state ultimately spent hundreds of millions of dollars to upgrade the institutions and the care provided in them, governors of Massachusetts began a major push starting in the 1990’s to close those same facilities and privatize their services.

The question remains whether the privatized group home system is a truly adequate replacement for the upgraded institutions.  As Orzechowski states at the end of the book, Vitkus:

…knows that abuse and neglect still exist in the system. Battles involving agencies like the Massachusetts Department of Developmental Services, privately contracted vendors, families, whistle blowers and advocates continue—often in court—across the United States.

Ultimately, “You’ll Like it Here” is an uplifting account of the life of a man who survived some of the worst experiences life has to offer. If you want to get a sense of what it was like, and what it took to survive, in large institutions before the intervention of people like Ben Ricci, Beryl Cohen, and Judge Tauro, you should read this book.

Advertisements

Father and sister banned from all contact with developmentally disabled woman because they cried when they saw her

October 19, 2016 5 comments

Can it really happen in America that the state can take an individual into its custody, and then not even let that person’s family know where she or he is, for months on end?

Yes, that is apparently the case if the individual is mentally ill or intellectually disabled.

In one of the more bizarre and severe instances of restrictions placed by the state on family contact, a court-appointed guardian has banned family members of an intellectually disabled woman from all contact with her because they allegedly became too emotional when they visited her. The 28-year old woman, Chelsea Barr, is dually diagnosed with intellectual disability and mental illness.

Chelsea’s father, David, and sister, Ashley, have not even been told for almost a year where she is living. Clinicians in at least one hospital said the family was to blame for signs of agitation and psychotic symptoms allegedly shown by the woman after the family visits.

The ban on family contact was imposed after Chelsea alleged that she had been sexually assaulted by the alleged boyfriend of her mother over a two-year period from 2012 to 2014. Chelsea’s mother, Nancy Barr, and her alleged boyfriend, John Leone, have both been arrested and are facing trial in Salem Superior Court in connection with the alleged assaults.

In addition to banning Leone and Nancy Bar from visiting Chelsea, a guardian with the Department of Developmental Services last Thanksgiving extended the prohibition to other family members and a family friend, who have not been implicated in the alleged crime.  The only family member who is currently allowed to visit Chelsea is a maternal aunt, who Ashley Barr said had little prior contact with Chelsea and maintains little contact with either Ashley or her father.

Chelsea (left), David, and Ashley Barr at Tewksbury State Hospital in October 2015. It was the last time that David and Ashley were permitted to visit Chelsea.

Chelsea (left), David, and Ashley Barr at Tewksbury State Hospital in October 2015. It was the last time that David and Ashley were permitted to visit Chelsea.

“As far as I’m concerned, Chelsea’s been kidnapped,” David Barr said in an interview.  Both David and Ashley said their lack of contact with Ashley and knowledge of her whereabouts have filled them with emotional distress. “We don’t even know where she is, and no one will tell us,” Ashley said. “It’s really, really hard to take.”

The Barr’s case is, unfortunately, not unique. We have reported on other cases (here and here) in which family contact with developmentally disabled family members has been severely restricted by the Department of Developmental Services. These restrictions also appear to happen in cases in other areas of the health care system, such as the highly publicized case of Justina Pelletier, who was held for nearly a year in a locked ward in Boston Children’s Hospital, and kept from all contact with her parents.

“This is unfortunately yet another case in which DDS and the probate court system has failed families of developmentally disabled persons,” said Colleen Lutkevich, COFAR executive director. “The family always seems to be made the focus of blame when problems occur.

“In this case,” Lutkevich added, “a young woman, who was victimized by sexual assault, is being further victimized by being isolated from members of her immediate family who could provide her with the love and support that she needs.”

David and Ashley have tried for months to get answers from the Department of Developmental Services and from the Department’s court-appointed guardian for Chelsea, and have gotten little information from them. They have gone to their local legislators and gotten little help, and have even gone to the media, but have been unable so far to get any news outlets to report their story.

Neither David Barr nor any other members of Chelsea’s family, other than her mother, are alleged to have known about the alleged sexual abuse while it was happening, and none have been charged or implicated in the crime. David Barr was divorced from Nancy Barr in 2003.

During the period of the alleged assaults, Chelsea had been under the care of her mother and had been living in her mother’s home. David Barr said that Nancy Barr has also been diagnosed with mental illness.

After Chelsea told a family friend about the alleged abuse in 2014, the friend reported the matter to police, and Chelsea was immediately removed from her mother’s care. She was apparently placed in a shared living arrangement in Haverhill, but that location was not disclosed at the time to any other members of the family.

In the months that followed, the family was only sporadically informed about Chelsea’s whereabouts.  Chelsea’s sister Ashley and her father said that virtually no information was provided to them for the first month after Chelsea’s removal. They were then allowed to visit her only a handful of times, either at a DDS area office or in Massachusetts hospitals to which Chelsea was admitted, reportedly after psychotic episodes.  Ashley Barr currently lives and works in Rhode Island.

Last Thanksgiving, the DDS guardian, Dorothy Wallace, a psychiatric social worker, terminated all family contact with Chelsea. Ashley said she and her father have not been permitted to visit or call Chelsea for nearly a year, and they don’t know where she is currently living.

Guardian testifies against the family

Wallace, the DDS guardian, has declined to speak with COFAR regarding the case. In statements she provided in probate court in August 2015, she said she ordered that the family’s contact with Chelsea be restricted at that time because Chelsea’s father and sister would become overly emotional during visits with her. Wallace said clinicians in various hospitals in which the visits took place complained that Chelsea would be agitated and upset after the visits and that her symptoms of bipolar disorder would then become aggravated.

Wallace also contended that on one occasion, Ashley was overheard telling Chelsea not to listen to medical personnel at a hospital.  Ashley disputes that, saying Chelsea had told her people were making fun of her, and that she told her not to listen to whoever was making fun of her. “Maybe someone misinterpreted me,” Ashley testified during an August 2015 probate court hearing. “I would never tell Chelsea not to listen to doctors.”

Wallace and Jill Casey, Chelsea’s DDS service coordinator, testified in the August 2015 probate hearing that their goal was to reunite Chelsea with her family once she was “clinically stabilized.” However, as of October 2016, more than a year later, the family has received no word from DDS as to when or if such a stabilization has occurred.  Ashley Barr said her calls and text messages to both Wallace and Casey have gone unanswered.

DDS Commissioner Elin Howe responded to an email from COFAR about the case on October 6, and would say only that the case was under review. However, as of today (October 19) neither David nor Ashley had been contacted by the Department as part of that review.

Ashley acknowledged she and her father did become emotional at times during visits with Chelsea because she appeared upset at being kept isolated from them and often appeared to be over-medicated.

“For several visits we did cry in front of Chelsea, I mean how could we not?” Ashley said. “She was alone, scared, by herself, and just went through a horrific thing for about two years. So yes, my father and I did cry, and I was an emotional mess for a very long time.  Watching my sister all drugged up, she could barely talk, and given the state she was in, it was very hard to keep it in. I walked out of the room most of the time so my sister wouldn’t see me.”

In one of the last instances in which they were allowed to visit Chelsea, Ashley said it appeared she had not been bathed.  Ashley personally gave her a shower at the hospital. Her hair was so dirty and matted, Ashley said, that she had to use an entire bottle of shampoo and conditioner to untangle it.

The enforced isolation of Chelsea appears to violate DDS regulations, which include the right to humane and adequate care and treatment, self-determination, least restrictive care, and integration of the person in the community. In addition, people in DDS care have a right to communicate, the right to have reasonable access to a telephone and to make and receive confidential calls, and the right to be visited and to visit others “under circumstances that are conducive to friendships and relationships…”

David Barr frustrated in gaining guardianship

Like many probate cases, this case has a complex history. David Barr has tried without success to gain guardianship of Chelsea following his divorce from her mother.  In early 2015, the Essex County Probate Court passed over David Barr and a long-time family friend, who had offered to be Chelsea’s guardian, and instead appointed Wallace, the DDS-paid psychiatric social worker, who had never met Chelsea, as her guardian.

David Barr said he would have supported the family friend as Chelsea’s guardian, but “we were totally ignored.”  Barr has since filed a new petition for guardianship in probate court.

In the probate court hearing in the case in August 2015, David was described by Chelsea Barr’s DDS service coordinator as a “bully” because he allegedly swore at her when he first met her and once left a threatening message on her voice mail that he was going to “get you people.”

The Barrs had no attorney at the probate hearing, and there was consequently no cross-examination of the service coordinator.  Ashley Barr says her father was threatening only to someday sue DDS over the restrictions placed on his contact with his daughter. “Not one time did my father ever mention coming after them violently,” Ashley stated in an email. “He’s trying to get his daughter back and not end up in jail.”

Ashley added that her father was not liked by some of the staff of Chelsea’s day care provider agency because he would become angry and reprimand the staff following several instances in which Chelsea walked out of the provider’s facility unattended.

Restrictions on visits and information blackout began after the abuse was reported 

Ashley Barr said that after the alleged abuse of her sister was discovered in October 2014 and Chelsea was removed from her mother’s care, “nobody would talk to us.”

Ashley said she was initially unable to get any information about Chelsea or her whereabouts from either the DDS service coordinator or her supervisor at DDS.  She said she even contacted the police and was unable to learn anything from them. “My dad and I have no criminal record,” Ashley said, “yet we were still treated like criminals.”

Then, in November 2014, Ashley was contacted by Jill Casey, the DDS service coordinator, who said she would be allowed to visit Chelsea at the DDS area office in Lawrence for about an hour. David was not invited to that visit.

Ashley said she was told during the visit not to ask Chelsea any questions about where she was living. She said Chelsea “looked scared,” and said several times that she wanted to see her father and to come home.

A family friend, who was allowed to visit Chelsea around this time, said Chelsea was living in a home in Haverhill owned by a woman who had two or three other developmentally disabled persons living there. The friend said she was instructed not to tell anyone in Chelsea’s family where Chelsea was.

The friend said she was allowed on one occasion to take Chelsea out of the Haverhill home for the afternoon. Chelsea was upset, she said, because she wanted to see her family. She also wanted to sleep over at the friend’s house, but that wasn’t permitted by the guardian.

It wasn’t until April 2015 that Ashley was next allowed a visit with Chelsea – this time in Arbor Fuller Hospital in Attleboro, where Chelsea was scheduled to celebrate her 27th birthday.  Ashley said she was allowed a number of visits to Arbor Fuller, and David was allowed to visit as well, though a lesser number of times. It was apparently at Arbor Fuller, that Ashley and David first reacted too emotionally when they saw Chelsea.

In testimony in the August 2015 probate court hearing, Wallace, the guardian, contended that David Barr further agitated his daughter during at least one visit by telling her that she would be going home soon and that he would become her guardian.  Hospital clinicians, Wallace said, subsequently asked her to terminate the family’s visitation privileges.

David Barr testified in response that he was trying only to reassure his daughter, who would become upset whenever he and Ashley had to leave. “I was just trying to provide reassurance that she would go home and that I would always be by her side and would try to get the guardianship,” David said. “She was there alone and scared. Isn’t that reassuring someone? Trying to give her confidence she isn’t going be left alone…?”

DDS and guardian repeatedly said family needed to be “educated”

During the probate court hearing, Wallace, Casey, and Barbara Green Whitbeck, a DDS attorney, repeatedly stated that they considered it necessary to “educate” David, Ashley and potentially other family members about what was in Chelsea’s best interest and the extent of her mental illness.

“I talked to Ashley,” Wallace testified. “She was angry and wanted to maintain the visits (with Chelsea).  I tried to educate her that Chelsea is psychotic and symptomatic – that it can take two, three, four months (to stabilize) her.  It’s not quick.  I don’t think they (the family) understand the magnitude (of her illness).”

Ashley responded in an interview that she and her father felt that Wallace and Casey were being condescending in seeking to “educate” them about Chelsea.  “We have known and talked about Chelsea’s conditions since day-one, 20 years ago, and about what Chelsea has been diagnosed with. It’s nothing new to us,” Ashley said. “We don’t need them to repeat things that we already know about Chelsea’s conditions.”

In June 2015, Ashley found out from her aunt that Chelsea had been admitted to Lawrence General Hospital because her psychiatric symptoms had flared up.  Ashley was subsequently allowed to visit Chelsea a handful of times at Lawrence General, but David wasn’t, for reasons that were not provided to them.

After a short stay at Lawrence General, Chelsea was admitted to Tewksbury State Hospital. Ashley said that when she was living in Connecticut at that time and drove up to Massachusetts several times a week to visit Chelsea.

Chelsea’s father was finally allowed to visit her at Tewksbury State in October 2015. Chelsea appeared drugged during that visit as well, according to Ashley. And that was the visit in which Ashley said she needed to use an entire bottle of shampoo and conditioner to untangle her hair.

That was also the last time either David or Chelsea were permitted to visit Chelsea. “We were told by Dorothy Wallace we were getting Chelsea too excited and they were trying to control her medicine,” Ashley said. “That was an excuse. How else is she going to react when she sees her family and wants to go home? Of course, she’s going to get upset.”

Ashley did manage to see Chelsea without permission at Tewksbury State in December when she visited under an assumed name. She gave her Christmas presents during that visit. It was the last time she would see Chelsea.

Chelsea and her father hug good-bye at Tewksbury State Hospital.

Chelsea and her father hug good-bye at Tewksbury State Hospital.

In May, Ashley found out she was pregnant and learned that she was going to have a girl. She contacted the guardian to ask whether Chelsea would be allowed to come to the baby shower, which was planned for a restaurant in Andover. She said Wallace denied the request and told her Chelsea would not be informed that she was pregnant.

Family friend also denied visits 

The family friend who initially reported the alleged sexual abuse of Chelsea to police had initially been allowed to visit Chelsea, as noted earlier. However, when the friend tried to visit Chelsea at Tewksbury State in April on her 28th birthday, she was told that Chelsea was no longer there.

The friend said she was also told by a staff member at the hospital that she too had been placed on a no-visitor list.  She said she was not given a reason for that prohibition. The friend said she understood that the only family member still allowed any contact at that point with Chelsea was the aunt, who had previously had little to do with her.

Ashley said David did hear from Chelsea one last time in July when Chelsea apparently managed to find a cell phone and called him. She said the cell phone had a New Hampshire area code, but that Chelsea did not know where she was.  The call was terminated after two or three minutes, she said.

“At that point, we knew she was still alive,” Ashley said. “But that’s all we knew.”

Call the Barr’s local legislators

When we at COFAR heard about this case, we contacted the office of David Barr’s local House member, State Representative Linda Dean Campbell.  Both Ashley and the family friend had previously contacted Campbell’s office, but a staff member in the office indicated at that time that the office could do little to help them.

When we contacted Rep. Campbell’s office earlier this month, the staff member did offer to contact DDS on behalf of the Barrs. The staffer reported back that DDS would not discuss the case with Campbell’s office, but would pass along Campbell’s concerns to others in the Department.

You can contact Rep. Campbell’s office at 617-722-2430, or send an email to Linda.Campbell@mahouse.gov, and urge them to continue to try to work with DDS to resolve this case.

In addition, you can contact Governor Baker’s office at 617-725-4005; and DDS Commissioner Elin Howe at 617-727-5608; or email: elin.howe@state.ma.us. Say you believe David and Ashley’s visits to Chelsea should be restored immediately. Also, let them know that you hope and expect that as part of their review of the case, DDS officials will contact and interview both David and Ashley.

GoFundMe appeal

David and Ashley Barr have also launched a GoFundMe appeal for funds to hire an attorney to represent them in probate court. You can find their petition and contribute to it at https://www.gofundme.com/helpchelseaB.